1 Department of Dermatology, Reference Center for Genodermatoses and Rare Skin Diseases (MAGEC), Necker- Enfants Malades Universitary Hospital, Assistance Publique - Hôpitaux de Paris-Centre (AP-HP5), Paris, France.
2 Department of Pediatric Social Work, Necker-Enfants Malades Universitary Hospital, Assistance Publique - Hôpitaux de Paris-Centre (AP-HP5), Paris, France.
3 Paris-Est Creteil University, EpiDermE, Créteil, France.
4 Transversal Unit of Therapeutic Patient Education Necker -Enfants Malades Universitary Hospital, Assistance Publique -Hôpitaux de Paris-Centre (AP-HP5), Paris, France.
5 Department of Physical Medicine, Necker-Enfants Malades Universitary Hospital, Assistance Publique - Hôpitaux de Paris-Centre (AP-HP5), Paris, France.
6 Department of Dermatology, AP-HP, Henri Mondor Hospital, Créteil, France.